Today is my 31st wedding anniversary. As I mentioned on facebook, I can't believe I am old enough to be married that long. Time really does fly when you are busy living.  I am so grateful to have chosen such an amazing life partner. We have been through so much together and have been such a wonderful team. It's easy, after so much time as gone by, to become complacent and take each other for granted. I try not to, but sometimes I do.

Gratitude truly is the sweet spot of life. The more we can partake, the better life is. 

In celebration of my anniversary and as a tribute to my husband Neil, I am sharing the first story in Breathe. 

Appreciation

Who was lying on the floor of the hospital intensive care room with me when Kyle, our six-month-old baby, was seizing uncontrollably? 

Who held me as I cried, the night we realized Kyle was most likely autistic?  

Who tried so hard to make eye contact with his son he shined a flashlight on his own face while under a sheet, in hopes of creating a tiny connection? 

Who dove right in with me as we waded through therapies for Kyle, often to find they did not provide the answers we were seeking? 

And who recently got up to care for Kyle when we were both very sick? Who looked at me and said, “I’ll do it. I owe you one.” I groaned. “Nope,” he said, “we’re a team. This is what I do for my partner.”

Who? My rock, my teammate, my lifeline of support -- my husband, Neil -- who still stands beside me after all these years as we celebrate the baby steps we call progress.

Thank you. Thank you. Thank you.

Though Breathe is my journey, and Neil would probably have a different story to tell, we always have stood together as a team, supporting each other and working together for the greater good of our family. 

Fortunately, we never lost sight of what brought us together in the first place. Our special partnership -- our marriage -- remains strong. Husbands often stand in line behind children, too easily taken for granted and pushed to the sidelines. This is magnified when there is a child with special needs in the family. It’s easy to become complacent. In fact, it’s so easy I got to the end of this book and discovered a gaping hole in my story. I had not acknowledged the debt of gratitude I owe Neil.

Expressing appreciation is a powerful stepping stone on this path. It is one that can never be revisited too often. Neil didn’t sign up to walk this path. Unlike me, he had no preparation or education. 

Autism has the power to make even the strongest person feel incompetent as a parent. Rather than crumbling, Neil has risen to the occasion time and again, standing strong and tall in his role as father to Kyle and our daughters. Hand in hand, we have walked this journey together, learning to love and live well in uncharted waters, reinventing ourselves both individually and together as we went along. Neil has become more than I ever could have envisioned.

I believe a heartfelt expression of gratitude is a power booster for loving and living well on our life’s journey. So to my husband, Neil, I say thank you. Thank you for taking the high road, the rockier road, when you could have abandoned the ship a long time ago. But, that is not who you are, and I knew that from the very start. In good times and in tough times, for better or for worse, you have been my teammate and my rock. I have never felt alone.

Oxygen-Rich Tool

Who holds your hand? Who is your rock? Look that person in the eye and express your heartfelt appreciation. The more detail, the better. Is there a lump in your throat? Say it anyway. Ultimately, it feels so good.

I just returned from a “family” vacation. This year our family looked different than previous years.  Kyle did not come, which is typical of our vacations. But we had the addition of two wonderful young men, Rachel’s husband, JB, and Leah’s boyfriend, John. They got to put up with the Nobels for an entire long weekend and they even seemed to enjoy themselves. I loved spending time with my daughters and seeing them so happy with their guys. Both are wonderful young men who are helpful, fun to be with, and add extra life to our family. 

Soon after we arrived in Estes Park, Colorado, we  discovered there was no cell phone signal at our condo or anywhere in Estes Park, for that matter. At the edge of Rocky Mountain National Park, I suppose it is nestled too close to those gorgeous mountains. 

For the record, when I go on vacation, I REALLY go on vacation. I do not call home often. A day or two can go by before I check in. I’ve decided vacations are not as potent if I call a lot and then get caught in self created mental drama about anything happening at home. No need to introduce unnecessary knots in the stomach when I am trying to take a break and remove myself from my responsibilities. There is never anything that can be done if something IS going on at home, except worry.  And I can be pretty good at that. Obviously, in case of an emergency, I want to be contacted, but generally, I enjoy the disconnect. 

This past weekend, I had an internet signal on my IPod and was able to retrieve email and even use Skype. On the one Skype call I made I found out a few things that for a little while, began to take up residence as stress in my gut.  Better off not knowing, I decided. Other than two brief email reports, I did not have contact with my caregivers for the weekend. 

One of the great things about vacations is how they can throw me into the present moment. If there is fantastic scenery (Colorado Rockies) or I am exerting myself (our hike at 11,000 ft.), or doing something exciting  (whitewater rafting), or simply enjoying a meal with those I love, my soul is transported. I go to that magical place known as the MOMENT where I am fully absorbed in life. 

I believe this is one of the best ways to come home refreshed and ready to take on my Kyle responsibilities with new calm. And yes, when I returned, he was in a rough spot, yet again. Did I need to know about it while at Dream Lake enjoying the last few hours of our vacation?  Nope. The drama of home will always be there for me when I am ready to get involved in it. And as a bonus, a true vacation enables me to see a situation with new eyes. 

The joy of a vacation is to be treasured. I strive to stay as immersed in the moments as possible. 

PS... There are many ways of getting immersed in the moments without leaving home. 

“Be More With Less” suggests: 

Get Lost 

• Get lost in conversation.

• Get lost in a great book.

• Get lost in the smell of a local pizzeria.

• Get lost in planning your next project.

• Get lost in someone’s eyes.

• Dump your watch and phone and get lost in time.

• Lose your map and get lost your surroundings.

Phew! I’m back. It’s been a busy couple of weeks with some exciting life changing developments for my family. I am just beginning to process it all. Wanna listen in? Of course you do. 

During some of the roughest days of the last few months with Kyle, Kathy, my friend and coauthor, asked me to think of five reasons why the current situation was good. Yup, she threw the old “look for the good” right at me. It’s hard to watch your child suffer (and suffer alongside him) and find the good. Needless to say, I had great resistance to this challenge and I don’t think I ever got back to her with an answer.

Look for the good, look for the good. It can help to come back to basics. The good was that I could be there for my son in our comfortable home. I had the physical and emotional strength to do what I had to do, although some days, I wasn’t quite sure about that part. He was reaching out for reassurance in an appropriate way for someone feeling so scared and uncertain. And, we were trying to find a medical solution to his issue.  Have I gotten to 5 yet?

Sometimes the good occurs in the future and you have to have faith and trust. Faith. Trust. Not so easy.  In my case, an outcome which had yet to come into my awareness, was going to happen. I just didn’t know about it yet. 

A few weeks ago I was sitting with Kyle during one of his rough cycles and it became very clear to me that something needed to change. Unfortunately, a big part of this situation was not in my direct control.  But was the entire situation out of my control? I realized  I really needed more support. I wanted more help on the front lines of taking care of and working with Kyle during both the healthy times and the rough times. Itching for more freedom and just plain exhausted, I knew that this was  where I could make a change. I could actually have some control of the uncontrollable.  

This marathon is long and there are no prizes given at the end for walking the road on your own. The idea for my “thannie” (therapist/nanny) was born. How were we going to keep Kyle home with us and also have more of a life? How were we going to see our daughters, both living out of state now, on a more regular basis? A thannie was the answer. It became crystal clear and I wondered why I had not thought of this sooner. 

It’s one thing to have the idea and it’s another to take action. I percolated for a few days and painted myself a picture of exactly what I was looking for. I realized it could take a long time to find just the right person but I was going to keep trying until I found her. 

I began to put my feelers/flyers out. Within a couple of days my call was answered loud and clear during a phone conversation with my daughter Leah. She told me about care.com. For some reason, it had not occurred to me to look online. 

After a deliberate search and many interviews, I was contacted by the perfect fit for Kyle. I almost told her I was looking for someone who lived closer but I was so drawn to her during the phone interview, I knew we had to meet. It seemed like divine intervention that we found each other. She came for the first interview on one of Kyle’s roughest days. Nothing seemed to phase her. Her passion and enthusiasm for people with special needs bubbled forth. As a bonus, she had extensive experience as a special education teacher. I knew during our first meeting that Tammy was just the person I was looking for. 

It feels as though my life is about to change in a big way. In fact, it has already changed significantly in the short week she has been working for me. Her special connection with Kyle is blooming quickly.  Breathing just a little bit deeper, my heart feels good.

P.S. Tammy works with Kyle part time. The other part of the time, I am able to be a much better mom and guide for Kyle. There's good all over the place here.